Our daughter, Nadezhda, was diagnosed in May 2010 with Dravet Syndrome at age 3. It is a rare and severe form of epilepsy. This blog is for updates on our lives, our thoughts, and feelings. Everyone needs a voice, and here, ours may be heard.
Also, while epilepsy is often misunderstood, Dravet Syndrome is altogether unheard of. We would like to be informative about Dravet Syndrome and supportive for others dealing with similar circumstances.

Friday, April 08, 2011

Be Kind

I am in a super secret group of great individuals that meet remotely and secretly and discuss our issues and how to solve them.
OK, really it's just a facebook support group only for parents of kids with Dravet Syndorme.  Hehehe.  Because of this group I now have friends all over the world that understand my concerns, happiness, and deepest sorrows better than anyone else.  It's cool and it's been very helpful.  Some of these moms are soooooooooooo full of great info and resources... and support.
I hope I am not breaking our secret pact of confidentiality by talking about this in a public blog.  But I need to share.  Today, there was one post on the wall about a mom taking her child out to do something fun because it had been a hard day.  They were drinking cocoa and her daughter had a myoclonic jerk and spilled the cocoa all over her special new outfit.  3 middle aged ladies at another table made snide comments about how kids these days have no manners and how this girl had no "poise".  Don't you think they would open their eyes and notice that the mom was feeding a cake to the kid and helping her with mostly everything ... clue in ladies... she has special needs.
Now, I know that in the past I have been a gawker at people that are "different".  I don't think I ever meant to be rude but I was curious.  I hope I never hurt anyone like these ladies hurt my friend and her daughter.  So I am asking that instead of gawking or making rude comments, even if the person isn't special needs - cause you never know, just smile or give them a hug instead.  I still have room to improve in this area too.  Lets BE KIND and love each other.  And don't be afraid either.  It's not contagious, and these are some of the sweetest kids in the WORLD!!
Although I must say that if you do talk with people who have special needs kids, being gentle in comments and questions is good.  Many of us parents are "wounded" and get "a bit" defensive when we sense our kids are in any sort of danger, even mental or emotional danger.  But we'll respond well to kindess :)
I was impressed with the responses to this story.  So many of the other moms said that they want to teach people so they can understand.  They said they forgive people like this with ease!  I was glad to hear that.  A few ladies said they pray for people like this to have their hearts softened and their eyes opened!  I was glad to hear that.  A few of us also said we would like to rip those mean ladies a new one!
It is hard to be on either side of the spectrum, an onlooker or special needs parent.  But we can all be kind and understanding to each other......... That will work well!  Ok, ready... GO BE KIND (to everyone)
so cute!!!  it's hard to not be kind to this cutie!

ps.  this is not supposed to be rude or "holier-than-thou"-ish.  I just wanted to say my thoughts/feelings and I hope they came out kindly, like I was thinking them in my head.... My communication sucks.


  1. I thought you said that just right. I am very impressed at the kind responses of the moms, I just felt mad! Being kind and not assuming about anyone's situation is a good reminder! Thanks geller

  2. She is cute! So glad she loves her swing. I think you communicate just fine.